Today was a much better day. Harper came off of the EEG machine, and it indicated no seizure activity. The doctors have decided that given how well she is doing and the fact that her vital signs are so good they will not do a spinal tap at this time- she has no other signs of having an infection, so they’re going to give her some time. They still strongly believe that the other night’s episode is seizure related, and they decided tonight to take her off of the phenobarbital and increase her Keppra dosage to see how that works for controlling seizure activity.

Harper got moved to a big-girl crib today, complete with mobile and aquarium toy (which she loved!). We got to wash her hair, change diapers, hold her, change her clothes… All kinds of wonderful parent things! She also got restarted on her feeds, although she did rip out a feeding tube and have to have it replaces. (Apparently she is over all of the tubes!)

One of our favorite doctors came to talk to us tonight, and she said at this point they feel good about Harper’s progress and their goal now is to get her ready to go home. That means they have to get her dosages worked out on her medications- finding the right seizure medications, making a decision about reflux meds, and getting her off of the morphine (she can go home with the methadone). We also have to get her feeding worked out as she still is not able to suck and swallow, so speech therapy will be working with her this week and doing some evaluations.

We continue to be so thankful to all of you who have been praying and sending such sweet messages of encouragement, and we are so blessed that God has given us such a feisty, spunky little girl who is showing everyone what His miracles look like!

We arrived this morning to see Miss Harper wide awake and very alert- too alert for the ventilator as she was trying hard to get free from it! Her feeds have been put on hold, and all medications are back to being administered via iV. Because she is so agitated with the breathing tube, they are having to give her morphine to keep her sedated enough to not rip it out (she is a fighter!).

We got a few more details regarding last night’s “episode.” She had been very lethargic and around midnight started to have several desat episodes. Her nurse (Ms. Charlene- aka Harper’s guardian angel) was checking on her when she just stopped breathing altogether, went limp, and her heart rate began to decrease. Ms. Charlene immediately began to bag-ventilate her, so she only went without oxygen for about twenty seconds. She also had to have another line inserted to receive a blood transfusion.

The doctors do not feel that this has anything to do with Harper’s laryngomalacia and are leaning toward seizure activity. So, Harper is now hooked back up to the EEG as well, which means she will be confined to her bed again with the probes all over her head and the video camera recording her. If nothing shows up on the EEG in the next 24 hours or so, the next step will be a spinal tap to rule out infection.

So, there is no considering heading back to the coast this week… This curve ball has certainly put a halt in the overall recovery process, but we know that this is the best place for Harper right now and that (whether we understand it or not) God has a plan that’s being worked out through all of this.

We had a very quiet weekend… Our big girls came up for a visit, and Harper did nothing but sleep. There were no major changes with anything, and she continued to do well aside from continuing with the vomiting issues and the morphine withdrawal.

Then out of nowhere we received a middle of the night call from the doctor- for reasons no one can explain Harper stopped breathing. The theory is that it is the result of some kind of seizure activity, but no one really knows for sure.  She had to re-intubated with a smaller breathing tube than before due to extreme inflammation of her airways around her vocal chord area. She is now on steroids for the swelling, and had to have another chest x-ray (which was all clear). She is already requiring minimal oxygen support, but we don’t know yet how long she will have the new breathing tube. They also did some lab work and had to give her a round of blood products. They did another c/t scan to check her brain as that is always a concern in her case, but (praise God!) it is still looking good.

Prayers are appreciated as always as we accept another set-back (but praising Him that they were able to save our girl again and that her brain is continuing to heal)….

Not much to report today… Harper slept pretty much the entire day. Standard visits from OT and speech, and neuro came and removed the sutures in Harper’s belly and those going down the left side and back of her head… Now the only stitches remaining are on the front right side of her head. She also got taken off of the Phenobarbital (one of her anti-seizure meds) so now we are down to just the Keppra for seizures. She’s still receiving doses of morphine, but they’re giving her extra methadone and Tylenol to try to lessen the need for morphine. Her breathing continues to sound better and better, so the doctors this morning said they feel the laryngomalacia will resolve itself with time. The best news we received today was from neuro- because her head has been so stable with the removal of the EVD, thu are waiting until Monday or Tuesday to do a c/t scan, and if all is still good by then they will consider having her transferred back to Wilmington (if she isn’t ready to be discharged due to other issues)!

We are praising God for a much more peaceful and restful day today! So far there’s no word yet on results from yesterday’s tests, but Harper’s breathing seems to be a little better today and we’ve had no vomiting so far! She had visits from both the occupational therapist and the speech therapist today. OT is working on sensory issues to help keep her calm since that’s been a major issue the past few days, and speech is just focusing on getting her familiar with a pacifier (they can’t do much more with her at this point with her crying spells and breathing issues). While we haven’t heard an official word back from the ENT, Harper’s primary medical team seems to think that a lot of the issues we are seeing right now could be withdrawal-related. They are trying hard to get her off of that morphine, but it is a difficult process right now. She has a lot of different things going on to cause her pain and discomfort- her brain has been operated on a few times, she has fluid in her head, stitches on both sides of her head and on her belly, stomach issues from all the meds and finally getting milk feeds, skin issues on her bottom as a result of the stomach issues, swollen airways that make it hard to breathe, morphine withdrawal, and people constantly sticking her and messing with her and doing unpleasant procedures on a daily basis… She’s entitled to be cranky and miserable and to want that morphine to make her feel better! But hopefully as they continue to increase her methadone she will find more rest and become a happier girl again. At least we know that today she was able to find some quiet rest!

Here’s a basic run-down of yesterday’s events before we head into today…

Harper was very agitated all day with very little rest. She has full-blown stridor at this point, which means she squeaks when she breathes and has a very difficult time breathing. She began to have a few small episodes in which she would “desat,” which means she just wasn’t getting good air. By days end she received two breathing treatments by the respiratory therapist for her swollen airways, had another chest X-ray, and had a visit from the ENT specialist. The ENT performed a laryngoscopy, a procedure where they put a scope through her nose and airways and take pictures. Her initial thought is that Harper may have laryngomalacia, which is where part of the larynx (voice box) is weak and collapsing, blocking part of her airway. However, further evaluation is needed, so we should hear back from them today. Harper also continues to vomit frequently, so two things they are considering are adding reflux medicine and performing a bronchoscopy in the OR, but nothing has been confirmed yet.

From a neurological standpoint the day was eventful as well. First the neurologist decided to clamp off the EVD to monitor how well Harper is handling the fluid in her brain on her own before they made a decision about removing the tube. Then in the afternoon they came in to change the dressing around her tube, only to discover that there was no suture closing the area around the tube and it was leaking! This changed the plan, and they had to go ahead and pull the tube early and stitch her up, so they will be closely monitoring her head size and she will have another c/t scan today or tomorrow.

Medicine-wise… She is still on the same meds, and they are looking at adding reflux meds to her long list of drugs. They stopped the constant morphine drip, but she is still receiving doses of morphine through the day as well as the methadone to help with morphine withdrawal.

I think that covers all of yesterday… Now we’re off to see what today holds for our girl. Thanks for the prayers and encouragement!

Harper is continuing to take baby steps in the right direction… She is still on all of the same meds and assistance, but today had her first milk feeding via the feeding tube- a big step up from only IV fluids! She hasn’t shown any more signs of seizure activity and her swelling continues to decrease, and there was talk today of possibly starting to remove some of her lines throughout this week… Our girl is a tough little fighter!

What a day! Harper was not a happy girl today. She is extremely congested for some reason, and it is making it difficult for her to breathe. Because of that, she had to get checked quite a bit and had to have a chest X-ray, which she did not care for. It also caused her heart rate to be elevated most of the day, and prevented her from getting the good rest that she needs right now. They also came down a little bit more on her morphine, and she had a couple of more episodes with vomiting after feeds. All of that combined with still having a healing wound on one side of her head, an EVD drainage tube on the other side of her head, and a feeding tube in her nose made for one very unhappy baby today.

Harper also had visits from the physical therapist and the speech therapist today. PT worked some with her and said overall things looks good. They’re just continuing to work with her tight muscles in her upper body. Speech therapy came in to evaluate her readiness for bottle feeds. Unfortunately, they decided she is not quite ready- because of the time she spent on the ventilator she has lost coordination with sucking and swallowing. So, they will have to continue to work with her on those skills and she will have to continue with the feeding tube for now.

On a positive note, Harper did have another c/t scan today, and from what we understand it was good news. It appears that she has continued improvements in her ventricles and that she may be starting to absorb some of the fluid on her own… We’re still waiting on official reports from neuro, but so far it sounds very positive.

Prayer requests for tonight… Pray for rest for Harper and relief from the congestion, and also that they don’t find any major issue causing it. Also pray for a very weary mom and dad at this point- we’ve been so very blessed and have no reason to complain with all of the support we have, but it is draining to spend so much time watching your baby struggle and to be away from home and our other babies for so long. Thanks for the prayers, love to all!

It’s Harper’s three-week birthday today! In three weeks of life our girl has endured three brain surgeries (the first of which nearly took her from us), numerous c/t scans and X-rays, countless procedures and tubes and needles, feeding tubes, ventilators, multiple blood and plasma transfusions, countless medications, and visits from nurses, doctors, surgeons, therapists, and anyone else here at Duke (or so it feels, anyway). Yet through it all, she has managed to make us laugh and smile and has won the hearts of many special nurses and doctors who come in regularly just to visit our little miracle. God is already using this angel in mighty ways!

Today Harper was supposed to have a visit from the speech therapist to start bottle feeds, but she continued to have issues with vomiting after her feeds so they had to make some adjustments to her feeding schedule instead to see how she tolerates smaller amounts more frequently. She has started to show that feisty temper of hers and managed to rip two feeding tubes out of her nose today! She’s been taking down a little more on her morphine drip this afternoon, and this evening they increased the pressure on her EVD, bringing us a little closer to possibly having it removed. Praying that all continues smoothly overnight!

Today ends our third weekend at Duke. We had a great time having all of our girls in one place again! Harper is still stable. Her EVD drainage is slowing down and her feeds have increased, but she is struggling with the morphine wean. She was very irritable and started vomiting after her feeds, so they’ve had to implement another medication to help her with the morphine withdrawal since she’s been on it for pretty much her entire life at this point. We’re looking to see improvements with that in the next few days. We got to put some of her own onesies on her this weekend, held her a few times, and Mom got to change her diaper for the first time. Other than that, we’re just waiting to see what this upcoming week will hold!